How Breakthrough Immunotherapies are Rewriting the Future of AL Amyloidosis

AL amyloidosis is a rare disease often tied closely to multiple myeloma. HealthTree recently partnered with expert Dr. Rajshekhar Chakraborty from Columbia University Irving Medical Center to host a webinar to inform our community about the latest findings for AL amyloidosis. 

Read highlights from the webinar, Innovations in AL Amyloidosis: What New Treatments and Research Mean for Patients, where Dr. Chakraborty breaks down the complex science into actionable, hopeful insights for patients and caregivers alike.

Understanding the difference between amyloidosis and myeloma

While AL amyloidosis and multiple myeloma both originate in the bone marrow's plasma cells, Dr. Chakraborty explains that they behave differently. Understanding this distinction helps patients understand why their symptoms, such as fluid retention, shortness of breath, or dizziness, require highly specific monitoring.

"It's very, very important that you know about the condition and you know the nuances of the condition and be informed when you go to the doctor's appointment because there are a lot of similarities, but also a lot of dissimilarities, unique aspects of the management of AL amyloidosis apart from myeloma." 

Multiple myeloma

Cancerous expansion of abnormal plasma cells that overcrowd the bone marrow and overproduce non-functional antibodies.

Bone marrow, skeletal structure, and blood.

• Bone pain (especially in the back or ribs)

Bone fractures or lesions

Fatigue (due to anemia from bone marrow overcrowding)

Frequent infections

High calcium levels in the blood

AL Amyloidosis

Abnormally folded, highly "sticky" immunoglobulin light chain proteins misfold, form fibrils, and lock into tissues.

Vital organs (heart, kidneys, liver, gastrointestinal tract, and nerves).

• Severe shortness of breath and lightheadedness

Rapid swelling in the legs, ankles, or feet (fluid retention)

Foamy urine (signaling kidney protein damage). 

Enlarged tongue (macroglossia) making swallowing difficult.

Easy bruising, especially "black and blue" circles around the eyes.

Rapidly progressive numbness or tingling in hands/feet

Managing cardiac side effects as a medical emergency 

An important highlight from the webinar is the extreme time-sensitivity of cardiac amyloidosis. Dr. Chakraborty strongly emphasizes that circulating free light chains actively damage heart tissues every single day they remain elevated.

If a patient with a history of myeloma experiences new shortness of breath, rapid leg swelling, or unexpected dizziness, it shouldn't be dismissed as standard heart failure. It requires immediate medical evaluation to lower those light chains as quickly as safely possible.

Modern therapies have transformed treatment goals and life expectancy

Treatment goals have transformed over the last decade. Historically, survival rates for advanced stages were low, but modern medicine has changed that landscape for the better.

Therapies like daratumumab (Darzalex) are called by Dr. Chakraborty a "blockbuster" therapy for AL amyloidosis. It outperforms many other treatments for AL amyloidosis because it rapidly stops the production of new toxic light chains at the source.

There is new clinical data mentioned by  Dr. Chakraborty that surrounds immunotherapies like bispecific antibodies and CAR-T cell therapies. In modern relapse settings, these therapies are demonstrating remarkable complete response rates as high as 80% to 90%, offering unprecedented long-term control.

There are two types of recovery: hematologic (regarding blood cell counts) and organ (regarding vital organ function)

A foundational takeaway for patients tracking their lab work is learning the difference between how the blood responds versus how the body heals:

What it measures

How it's checked

Timeline

Hematologic Response

How quickly the production of toxic light chains has stopped.

Free Light Chain (FLC) blood tests

Rapid (Weeks to months)

Organ Response

How well the heart, kidneys, or liver are recovering from protein deposits.

Heart: NT-proBNP/Troponin Kidneys: 24-Hour Urine Protein 

Slow (1 to 3 years)

Dr. Chakraborty reassured patients that even though organ healing takes patience, the body’s natural scavenger cells (macrophages) do work over time to slowly clean up the deposited protein once the body stops producing harmful proteins.

Why having a multidisciplinary "dream team" is ideal

Because amyloidosis crosses multiple systems in the body, your hematologist shouldn't act alone. Dr. Chakraborty highlights why being treated at an academic or tertiary care center with an integrated, cross-talking team of hematologists, specialized cardiologists, and nephrologists is the absolute gold standard for achieving the best health outcomes.

Join the HealthTree community to learn more!

Knowledge is power, and being an educated self-advocate is one of the most impactful things you can do for your health journey.

We invite you to watch the full recording of "Innovations in AL Amyloidosis" to see Dr. Chakraborty explain these concepts in deep detail, review clinical trial slides, and tackle tough questions from the patient audience during the live Q&A.

Watch the recording

Don't let your learning stop here! HealthTree hosts incredible, free community events, educational webinars, and support chapters every month. Check out our upcoming calendar to register for events covering nutrition during blood cancer treatment, policy updates, caregiver roundtables, and more.

CREATE YOUR FREE ACCOUNT